By Doris Dahdouh, MSW, LSW, INHC, LMSW
As Mental Health Awareness Month comes to a close this May 2026, it feels important to pause and reflect not only on those living with Histiocytosis, but also on the caregivers and loved ones walking beside them through this journey.
Caregiving is an integral part of life for many families affected by Histiocytosis and rare disease. It is deeply meaningful, but it is also incredibly difficult. There is no easy way around that truth. Caregivers often carry enormous emotional, physical, financial, and mental responsibilities while trying to hold everything together for the people they love.
There are appointments to coordinate, medications to track, insurance battles to fight, symptoms to monitor, emotional breakdowns to navigate, fears to manage, and countless uncertainties that can feel overwhelming. Many caregivers quietly live in a constant state of hypervigilance, always anticipating the next crisis, scan result, flare, hospitalization, or difficult conversation. The emotional weight of caregiving is real, and too often, it goes unseen.
According to researchers Richard Schulz, PhD, and Paula R. Sherwood, PhD, RN, CNRN, in Physical and Mental Health Effects of Family Caregiving, caregiving can contribute to significant psychological distress, chronic stress, depression, social isolation, and declines in overall well-being. The authors explain that many studies have demonstrated the emotional strain caregiving places on individuals over time. While research continues to examine the direct physiological impacts of chronic caregiver stress, the emotional burden itself is undeniable.
And yet, caregivers often continue showing up day after day out of love.
In rare disease communities like Histiocytosis, caregiving is rarely “temporary.” It can become a long-term emotional marathon filled with unpredictability and uncertainty. Similar to what many patients experience, caregivers also carry both “macro” and “micro” uncertainties throughout daily life. As discussed by the Health Education England Genomics Education Programme in relation to rare disease, macro uncertainties involve the larger life questions: What will the future look like? Will treatments work? How will our family cope financially and emotionally long term?
At the same time, there are countless micro uncertainties that quietly accumulate each day: Will symptoms worsen today? Will insurance approve this treatment? Will we get answers from doctors? Will we make it through another difficult week emotionally? These persistent stressors can create chronic emotional exhaustion for caregivers and families alike.
Many caregivers put their own needs last. They become so focused on surviving, helping, advocating, protecting, and supporting that they forget they themselves are human beings who also need rest, care, support, nourishment, and emotional safety.
Speaking to all caregivers: Your mental health matters too. Your well-being matters too.
It is not selfish to care for yourself. In fact, caring for yourself is necessary. The reality is that chronic stress and emotional depletion eventually impact both the mind and body. You may have heard the expression, “You can’t pour from an empty cup.” There is truth in that. Caregivers deserve support, compassion, and space to breathe just as much as the individuals they care for. Remember that often.
At the same time, caregiving is not defined only by hardship. Interestingly, Schulz and Sherwood also reported that even when caregiving becomes emotionally intense and exhausting, many caregivers still describe meaningful and positive aspects of the experience. In their publication, they explain that caregivers often report feeling needed, finding deeper meaning and purpose in life, learning new strengths and skills, and developing stronger relationships and emotional connections through caregiving.
And perhaps this is part of what sustains so many caregivers through the hardest moments: love.
Love becomes the motivator. Love becomes the strength. Love becomes the reason people continue showing up despite exhaustion, fear, grief, uncertainty, and emotional overwhelm. There is something profoundly human and powerful about caring deeply for another person through suffering. It reflects resilience, compassion, sacrifice, courage, and connection in ways that are difficult to fully put into words.
Still, caregivers should never feel they must carry everything alone.
This Mental Health Awareness Month, I encourage caregivers and loved ones within the Histiocytosis community to give themselves a little extra grace and tenderness. Allow yourself moments of rest when possible. Accept help when it is offered. Reach out for emotional support. Talk openly about your struggles instead of carrying them silently. Your emotions are valid too.
You do not have to earn rest.
You do not have to justify burnout.
You do not have to pretend you are okay all the time.
Caregiving can be beautiful and heartbreaking at the same time. Both realities can exist together. And while caregiving may sometimes feel isolating, please remember this: you are not invisible, your efforts matter deeply, and the love you give has immeasurable value.
Sometimes the caregivers need caring too.
References
Schulz, R., & Sherwood, P. R. (2008). Physical and Mental Health Effects of Family Caregiving. American Journal of Nursing, 108(9 Suppl), 23–27.Health Education England Genomics Education Programme. Rare disease and uncertainty in patient experiences and mental health discussions.